Deadly Fatigue (Malaise) [Cancer Treatment Diary 11]

Long time no see.
To those of you who told me, 'I don't know if it's okay to say I'm looking forward to your note since you're suffering from your illness, but I am looking forward to it.'
It is okay.
You are allowed to enjoy it. Because I am still alive right now, and I only publish my writing when I am enjoying that fact. So, if you thought it was enjoyable, or if you thought it was good, that means my words reached you, and that makes me very happy. Since you told me that, I will continue to post. If you enjoyed it, please feel free to reach out again. Thank you very much. In return, I will continue to write these strange diaries.

During this gap, I was further struck down by the side effects of chemotherapy, and as soon as I started to recover a little, I had to have surgery. Ouch—because of the cancer, I didn't even have time to doze off. I won't forgive it. I'll talk about the surgery another time.

What is malaise?

I feel like this explanation is easy to understand. I used to tell my friends, 'It's like the extreme fatigue you feel when you have a fever from the flu.' When I worked as a nurse, while asking patients, 'Do you feel sluggish?', I would check their charts and test data to see how much they could move their bodies. ...The reason for this is that malaise is caused by a combination of several bodily phenomena. The causes of malaise common in cancer patients are said to include pain, muscle weakness, electrolyte abnormalities (changes in body pH due to vomiting or diarrhea), physical trauma (trying to repair damaged cells), sleep deprivation, and cachexia (loss of muscle and fat mass caused by cancer, chronic inflammation, or cytokines), but there are so many factors that it's impossible to say, 'This is the cause of the malaise!' It is also said that the cause of malaise is often unknown. The cause is just everything being the cancer's fault, so I won't forgive it. However, if the malaise is so severe that the patient cannot move, as a nurse, I provide personal assistance (hygiene care and mobility support), and if there is pain, I use painkillers and look for comfortable positions. If test data such as electrolyte abnormalities or anemia (bone marrow suppression) are poor, I consult with a doctor to treat them. Also, not limited to malaise, there is a system called CTCAE (Common Terminology Criteria for Adverse Events) that evaluates the side effects of cancer chemotherapy on a grade scale of 1 to 5, and I use this to record the progression of symptoms. This progression is used to evaluate treatment. Even if the painful situation cannot be helped at the time, those nursing records might become a clue to improving the suffering of patients in the near future. Nurses work in shifts, day and night, watching over patients and recording everything diligently, even in places where patients cannot see them.

Chemotherapy malaise is something different (Grade 1)

Malaise occurred early among the adverse events (side effects) of chemotherapy. At first, I was fooling around, saying things like, 'Huh, so this is malaise, Grade 1 (CTCAE).' Here, it was the kind of malaise you feel when you have the flu, even though you don't have a fever. It's a strange experience because I don't have a fever. I see, it's hard to go to the bathroom. If I don't focus my consciousness on 'going to the bathroom,' I feel like I might bump into something, even if I don't fall. It's a sensation as if part of my body doesn't belong to me. Maybe the malaise from chemotherapy is different from any symptoms I've experienced before.

Grade 1 malaise is a state where 'there is malaise, but it does not interfere with daily life.' Therefore, it's at a level where 'I can manage to work.' So, I worked. I am a nurse in a cancer ward who receives chemotherapy as an outpatient and administers chemotherapy to patients in the ward the next day. It's chemotherapy in my private life and at work. I work while thinking that I absolutely want to defeat the patients' cancer as well. I never forgive the cancer and am always furious at it. People around me told me, 'You don't have to work,' but nursing is a job that requires constant movement and constant interaction with others. Because of that, I didn't have to pay attention to my own heart, so this malaise was distracted.

In the flow of conversation with a patient, I once said, 'When I'm feeling physically unwell, I work and move my body to take my mind off it.' Of course, I have never told patients that I have cancer, and I never will, even if the cancer is cured. I would tell friends and acquaintances, but that is the nature of the patient-nurse (medical professional) relationship, and it is better for medical professionals to be energetic. Care for daily life when one is not feeling well should be provided by someone who is energetic, as if they are sharing their energy. 'That might be true. At first, I worked because it took my mind off the sluggishness and nausea, but when I force myself to move while feeling sluggish, I get dizzy,' the patient told me while looking out the window. And then, with a 'heave-ho,' they stood up from the bed, twisted their body, and muttered painfully, 'But I have to work soon.'

Working might be a salvation for a sick person.

Malaise so severe that my body feels slimy (Grade 2)

※From Grade 2 to 3, I was beyond being hospitalized; I was barely sure if I even existed, so there is nothing worse than this. I'm sorry for getting your hopes up!

After a certain cycle of chemotherapy, I went to bed while giving a play-by-play, saying, 'Whoa! It's here, it's here! The burning stomach discomfort! And the malaise! This is the worst! Let's have the cancer drop dead! I'm going to sleep for now!' And after curling up in my futon for a while, I realized, 'Wait... I'm deathly tired...?' It was a shift from the previous sensation of my body not belonging to me to a sensation of my body being pressed down by something heavy. It's heavy, and living is incredibly painful. There was a part of me that thought, 'If you're sluggish, you should just sleep.' Intense sluggishness turns even sleeping into a painful experience. Gravity is insane. My body cannot leave the floor. The Earth's magnetic field is weird only here. (※It's not the magnetic field.) However, even in such a state, I start to feel the need to go to the bathroom. Patients undergoing chemotherapy generally have kidneys that are easily damaged by anticancer drugs, so we try to drink plenty of water to reduce the burden on the kidneys as much as possible. So, even though I feel terrible, the number of times I go to the bathroom actually increases, which means I am trying my best to live by piling the worst on top of the worst. I get up to go to the bathroom, but it's heavy. I remember my anemia levels, which are barely being monitored. My vision is blurry. 'When I force myself to move while feeling sluggish, I get dizzy.' I remember that patient's words. I want to say, 'You were right!' if I see them next time. But they might worry, 'Were you feeling unwell?' They talk about themselves as if it's no big deal, but when it comes to others, their eyebrows turn into an 'eight' shape and their mood clearly drops. They are such a kind-hearted patient. Groaning, I headed to the bathroom, crawling along like a slimy receptionist madam from Monsters, Inc. (※Roz), with my mouth turned down in a grimace. This is something I can only do because I'm at home. I want people who have never been hospitalized to remember well that if you just put your hands on the floor while hospitalized, it's judged as a 'fall,' and you won't be able to walk freely. If you were to crawl, it would be a huge commotion. Please be careful.

Even after crawling to the bathroom, I rested on the toilet for a while. At first glance, I look like someone who is about to vomit in the bathroom, but it's not that I want to vomit; my body is just too sluggish to move.

Even after I managed to sit on the toilet seat, I was like Rodin (※The Thinker statue). Perhaps the person who contemplates philosophy was someone suffering from malaise. They say he is staring at the people who have fallen into hell, but perhaps this is hell. I think I will ponder philosophy on how to distract myself from the pain.

I crawl back from the bathroom again. Even Roz from Monsters, Inc. speaks slowly, but she doesn't move that slowly. That's too rude to Roz. My body, touching the bed, sinks deeper and deeper, and it feels like I'll never be able to come back.

By the next day, I was finally able to move around a bit.
I will hate the cancer, and use that energy to move my body and reclaim my daily life.

I learned that "people can sometimes feel like they are dying from fatigue." It is not just a matter of saying that if you are tired, you should just sleep.

When fatigue is severe, my body feels heavy from head to toe, and even breathing becomes difficult. It seems that physical lethargy should not be underestimated.

I will continue to administer chemotherapy in the name of gratitude to those unnecessary and purely harmful cells called cancer that gave me such an experience!